A year ago I was battling to see how many individual footsteps I could make beyond my front door. Some days I could walk 3 or 5 steps, some days a few yards, some days I wouldn't make it to the door at all. Much of everyday life was reduced down to the laws of time and motion. Using my then very limited (shot to bits, wired, emotionally and utterly exhausted) brain to somehow strategise my way through the ordinary tasks of each day. Every little shower a battle, getting dressed an achievement. I remember making a little camp on a blanket in the middle of my flat with almost everything I might need because getting up to get something like a glass of water was so hard.
The uncertainly has been one of the worse aspects of life with CFS... this little dark undercurrent. The words from my consultant, "Look, I can see you've very motivated, but so far there isn't a cure". Being told I need to accept and adapt. Coming across people who have had ME for 10 or 20 years. The feeling of being locked in. That often ominous trapped-ness has had a hidden blessing in it; without it I never would have been forced to find the other ways out. Other paths to freedom that I never would have taken. This has shown me who I am beyond my doing. This has shown me being.
I have been very fortunate in other ways. Firstly, for whatever reason I have known that the 10, 20 year-long ME story isn't mine. But I haven't been entirely realistic either. At first I kept assuming I was 3 months away from full health again. When I crossed the 3 month mark for the fifth time I set a new ‘deadline’ to be significantly better by. Somewhere between hoping for a miracle but having something to work towards. The very helpful, if imaginary timeframe that no longer needs to be secret was 6 months ago then - the end of September.
And well, have I met it? Not quite, and definitively kind of. The very typical hour I lived only two weekends ago would hint at no. An hour that could sum up much of the last year.... I was at the piano and inspired and started singing. I let it out, it felt good and free... could my voice be back? And then the singing stopped in its tracks, my vocal chords powerless, breathless and sore. And nothing I could do would fill the emptiness in my chest to create a note more of sound: no. No more singing. Not much talking for the rest of the day either. And the September sun was gorgeous and I walked down to the river. Only I didn't get very far. All I could do was lie on the grass watching people with dogs and families walk past on one of my favourite walks in the sunshine. I wept quietly behind my sunglasses. Trying to be OK with it, but also knowing I would pay almost any price to be free again. To sing and walk normally.
But I have turned a huge corner too. Probably because the experimenting and investigating has never stopped. More than one of my more left-field discoveries have made a huge difference (I will document more of this later). But it's also the culmination of everything I have been doing and just as importantly, not doing, over the last year.
Today I saw that the floor needed sweeping and swept it, forgot something upstairs and popped up quickly to grab it.. more than that, I've done full plank press ups in Pilates for more than two weeks in a row. No consequences.
If not fully healed yet, I am free of the worst of ME/CFS. I went to London for the weekend and, while I didn't make the party I was planning to go to to celebrate, I carried my case up the tube steps a few more times, I was able to brave more than one shop (including a whole 20 mins in TK Max so I'm already clearly a ninja). I went for a walk with a friend I hadn't seen for 6 weeks and we set off into Vickie Park. 20 mins in Alex looked at me, "Jess, I wasn't going to mention it, but look at your walking?!'. And I went on to walk and talk 6 kilometres that day. The next day I went to my first workshop in nearly 2 years and stood up and engaged with people for extended periods of time. I even danced a bit. I danced without consequences. I danced without my body shutting down on me. I danced. And I was fine for the whole week that followed and beyond. I was fine.
I went on my first mini-bike ride today.
And I am fine.
And then I went on a night walk.
And I will be fine.
I will be completely fine.
If you every come across anyone who has got over (or is getting over) ME/CFS I can assure you that they know precisely what it really means to live the delicate mixology that matches relentless determination with the right kind of letting go. Where you learn to surrender without ever giving up. Because it's the individually honed alchemy of all of those things that gets you there eventually. And the fact that I've hit on the right formula and am still persisting doesn't make me particularly brave or special. I just want to live a pain free, active, energy filled and fucking fabulous existence as much as anyone.
An ME/CFS Thriver